Hello All
I am sorry about the long overdue post. The last few weeks have been uneventful, apart from last week. The meds were doubled for Di, however I have seen no improvement. She is becoming more confused and frustrated with life. She can still knit and sew a few hems on quilts. We still take each day as it comes. She is enjoying the warm weather and sitting outside now. The ladies from the Church come to visit and take her out which is great.
The last week has been busy. With hospice care they allow you 5 days respite care. I am trying to ascertain if that is monthly or what. Anyhow I dropped Di off at the Brian's House in Bay City last Sunday. She was really not happy and I told her it was for a few days, but the majority of patients there are dying. It is a brightly colored house and the staff are fantastic. She was asked what she wanted for meals and where she would like them. Anyhow I left there and made my way to Saugatuck, on the west coast of Michigan, on the lake. It is very near Grand Rapids. It is a small, quant town. Lovely long shore line to walk along. I was on the beach by 3 and stayed till 8pm. Was really nice with warm sun. The Monday was overcast and a chilly wind blowing so did not do much. Still had a long walk on the beach. Tuesday morning was the same so I left and went via Holland to a a nice bakery stop buy bread and cakes!!!! Returned back to the Brian's House to collect Di. She was in a much better frame of mind and glad to be at home.
On Wednesday afternoon we left for Detroit and stopped at Rochester Hills at a real nice fish restaurant for dinner to celebrate Di's birthday. Then downtown to Holiday Inn for the night. Thursday walked to the Federal court house which was round the corner and waited for the swearing in process. There must have been about 50 people being sworn in. Was a good ceremony and the judge gave a small speech. I am now a full fledged, proud US citizen. Di still has to wait 2 years. Afterwards went back to Birmingham, which in Michigan is an exclusive suburb, and had lunch to celebrate.
Sunday, May 23, 2010
Thursday, April 22, 2010
FROM THE WEST COAST (of michigan)
I note that it is nearly a month since I last blogged. Sorry. Things are okay. Di started with hospice and we have been very impressed with them. A nurse comes once a week to take Di's vitals and chats. The doc also came to the house. We have also had a chaplain and social worker visit. They have increased the steroid meds so that she can knit and it has made a big improvement. The confusion is still there and she gets very frustrated at times [as does Ian].
We are currently in Holland on Lake Michigan (also called the west coast!). It is a nice town and all the spring flowers and tulips are out. Di is not so happy as she is out of her comfort zone. She fights with the (water) taps and not knowing where everything is. My sister is currently visiting from Cape Town.
We will go back to Midland this afternoon as that is less stressful for me. I have realized my life has changed and that I can't just go off for a walk and leave her here as Di then stresses. It is easier at home.
Well am being called for lunch so will try and write more often.
We are currently in Holland on Lake Michigan (also called the west coast!). It is a nice town and all the spring flowers and tulips are out. Di is not so happy as she is out of her comfort zone. She fights with the (water) taps and not knowing where everything is. My sister is currently visiting from Cape Town.
We will go back to Midland this afternoon as that is less stressful for me. I have realized my life has changed and that I can't just go off for a walk and leave her here as Di then stresses. It is easier at home.
Well am being called for lunch so will try and write more often.
Saturday, March 20, 2010
Decisions for the Journey
Hello
Time flies by so quickly. I realise that I have not updated the blog - sorry!! Di has been progressing slowly, though she now has great difficulty in knitting. She does not give up and tries and tries. Often she will get one row in and then make mistakes, or just plain forget what to do. It is extremely frustrating for her, and me!!!!
We have had many discussions on how to proceed with the medications and she begged not to go for another MRI and have the docs poke her with needles etc. I, and the children, explained to her that this was needed in order to try and get a few more months or to beat the cancer completely. When we were in Ann Arbor we spoke with the head of the department and he said that her chances were not that good as the tumour was such a progressive one. The thing that counts the most here is quality of life. The side affects of the aggressive treatment are not that pleasant. She has nose bleeds resulting in sheets having to be washed etc. She has shivering spells. This week the weather has been good and I have been in shorts and Ts, whilst she sat in a chair covered in a duvet and saying it is too cold. We have been told this is the result of the treatments.
Anyhow, my dear friends, I was going out of my mind. WHAT is the right decision? To fight on or stop? We called our Priest in and had a good discussion with him. As he left Fiona arrived and she and DI had a private talk, then Andrew appeared on skype and we had the 4 of us having a family discussion. Diana made the decision to stop the aggressive treatment and to enter hospice care. Both the children and I agreed to this. We know that God can heal whether on meds or not. So with that I called hospice in and they have taken control of her care. Di will remain at home and take comfort meds to make her life as comfortable as possible. The one big thing is that she has no pain.
With the fine weather I have taken her out and walked round the house and the fresh air has been good. We take one hour at a time. The docs have said that normally people live from 6 to 24 months with the tumour. we have had 6 months so enter a new path on our journey.
For me, I have no idea where the new road will take both of us. I have found the time extremely stressful and sometimes beat myself up about it all. Many tears have been shed. I will not use the 'd' word and talk about us all waiting in an airport departure hall waiting for our flight to be called. Or being on a ship sailing away and people on the other side waiting with great excitement to welcome their fellow traveller home. Life is about stories, so we talk about where and what we have done and what Di will be able to do on the 'wings of the eagle'. Life is a journey and nothing prepares us for some the roads we will take. Life is also a drama and I make up stories and situations to act out. Tears are allowed on this journey, but laughter is the best medicine.
I will keep you informed as we travel along this new path. Shalom. Ian
From Chris: Please continue to support Ian and Diana with your prayers. Don't be strangers. Diana very much enjoys chatting with folks. There is always much laughter in visiting with them which is as much an encouragement to me as it is to them. Spending time with Di will also give Ian a respite from time to time.
Time flies by so quickly. I realise that I have not updated the blog - sorry!! Di has been progressing slowly, though she now has great difficulty in knitting. She does not give up and tries and tries. Often she will get one row in and then make mistakes, or just plain forget what to do. It is extremely frustrating for her, and me!!!!
We have had many discussions on how to proceed with the medications and she begged not to go for another MRI and have the docs poke her with needles etc. I, and the children, explained to her that this was needed in order to try and get a few more months or to beat the cancer completely. When we were in Ann Arbor we spoke with the head of the department and he said that her chances were not that good as the tumour was such a progressive one. The thing that counts the most here is quality of life. The side affects of the aggressive treatment are not that pleasant. She has nose bleeds resulting in sheets having to be washed etc. She has shivering spells. This week the weather has been good and I have been in shorts and Ts, whilst she sat in a chair covered in a duvet and saying it is too cold. We have been told this is the result of the treatments.
Anyhow, my dear friends, I was going out of my mind. WHAT is the right decision? To fight on or stop? We called our Priest in and had a good discussion with him. As he left Fiona arrived and she and DI had a private talk, then Andrew appeared on skype and we had the 4 of us having a family discussion. Diana made the decision to stop the aggressive treatment and to enter hospice care. Both the children and I agreed to this. We know that God can heal whether on meds or not. So with that I called hospice in and they have taken control of her care. Di will remain at home and take comfort meds to make her life as comfortable as possible. The one big thing is that she has no pain.
With the fine weather I have taken her out and walked round the house and the fresh air has been good. We take one hour at a time. The docs have said that normally people live from 6 to 24 months with the tumour. we have had 6 months so enter a new path on our journey.
For me, I have no idea where the new road will take both of us. I have found the time extremely stressful and sometimes beat myself up about it all. Many tears have been shed. I will not use the 'd' word and talk about us all waiting in an airport departure hall waiting for our flight to be called. Or being on a ship sailing away and people on the other side waiting with great excitement to welcome their fellow traveller home. Life is about stories, so we talk about where and what we have done and what Di will be able to do on the 'wings of the eagle'. Life is a journey and nothing prepares us for some the roads we will take. Life is also a drama and I make up stories and situations to act out. Tears are allowed on this journey, but laughter is the best medicine.
I will keep you informed as we travel along this new path. Shalom. Ian
From Chris: Please continue to support Ian and Diana with your prayers. Don't be strangers. Diana very much enjoys chatting with folks. There is always much laughter in visiting with them which is as much an encouragement to me as it is to them. Spending time with Di will also give Ian a respite from time to time.
Thursday, March 4, 2010
Coming Home!!!
Morning from a great day in Michigan. I think spring is on the way, snow is melting and the sun is out. Di had a good day yesterday. This morning she is more awake but has a terrible headache. The docs have been around and say all her vitals are okay and it is ok to go home.
They have arranged for hospice to visit as I need help now. If she improves then we can stop the hospice and then recontinue. We have decided, in discussion with the docs, to give her a break from avastin tomorrow.
So we start a new day on the journey and see what happens. Thanks for all your prayers and support.
Love Ian.
They have arranged for hospice to visit as I need help now. If she improves then we can stop the hospice and then recontinue. We have decided, in discussion with the docs, to give her a break from avastin tomorrow.
So we start a new day on the journey and see what happens. Thanks for all your prayers and support.
Love Ian.
Better News
From Blog master as Ian calls me:
I spent most of Wednesday afternoon with Di. I found her awake and alert. She seems to have come out of the recovery time after the seizures. Time will only tell but she seems to be about where she was a week ago at quilting group. She was able to feed herself soup and salad for lunch -- a bit shaky but improving as time went on. The physical therapist had her use a walker and she seem far more confident and actually walked faster. She also climbed stairs. Ian was a bit taken aback when he arrived back from Midland and was very encouraged.
It was wonderful to spend time talking with Di. She talks about accepting God's will, wanting to give Him the glory, and being at peace. She has such faith, courage, and determination -- it is quite inspiring.
Not sure when Ian and Di will be back in Midland but they continue to covet your prayers and encouragement.
Chris
I spent most of Wednesday afternoon with Di. I found her awake and alert. She seems to have come out of the recovery time after the seizures. Time will only tell but she seems to be about where she was a week ago at quilting group. She was able to feed herself soup and salad for lunch -- a bit shaky but improving as time went on. The physical therapist had her use a walker and she seem far more confident and actually walked faster. She also climbed stairs. Ian was a bit taken aback when he arrived back from Midland and was very encouraged.
It was wonderful to spend time talking with Di. She talks about accepting God's will, wanting to give Him the glory, and being at peace. She has such faith, courage, and determination -- it is quite inspiring.
Not sure when Ian and Di will be back in Midland but they continue to covet your prayers and encouragement.
Chris
Tuesday, March 2, 2010
No Good News Yet -- Keep Praying
Morning all
Another great sunny day in MI. No change with Di. The doc came and visited this morning. She is basicaly in a semi coma. She sleeps and sleeps. Will come to when spoken to and then falls asleep. Yesterday when talking to Andrew she fell asleep. She doesn't want to eat or drink. This morning after the nurse had given her a wash I made her get up to clean her teeth. The toothbrush was all over the place. Then back to sleep. She still can't feed herself. I have come to the conclusion that only God can heal her, whether that be healed on this earth or healed in heaven.
Sorry I do not have good news. Will report again. I have to go back to Midland tomorrow but will be back in the afternoon and will send the next report.
Love u all Ian
Another great sunny day in MI. No change with Di. The doc came and visited this morning. She is basicaly in a semi coma. She sleeps and sleeps. Will come to when spoken to and then falls asleep. Yesterday when talking to Andrew she fell asleep. She doesn't want to eat or drink. This morning after the nurse had given her a wash I made her get up to clean her teeth. The toothbrush was all over the place. Then back to sleep. She still can't feed herself. I have come to the conclusion that only God can heal her, whether that be healed on this earth or healed in heaven.
Sorry I do not have good news. Will report again. I have to go back to Midland tomorrow but will be back in the afternoon and will send the next report.
Love u all Ian
Monday, March 1, 2010
News from Ann Arbor
Hello
Well here am reporting from my second home. University of Michigan Hospital. Have been to see her old nurses and physio guys.
They have put Di in a private room opposite Nurses' station. That is good as she still can't work out that to call a nurse she must push a red button!!!!!! She sleeps the whole time but this is typical after 4 seizures. The doc came and says they want to still keep her and monitor the situation. She had difficulty eating with the coordination of her hands. She then gives up and I feed her.
The doc is getting the hospice people to come and talk with us as I may need help at home. I feel so for her. Well no other news really. Lunch has arrived so will help her. Will report when I have more news.
Ian
Well here am reporting from my second home. University of Michigan Hospital. Have been to see her old nurses and physio guys.
They have put Di in a private room opposite Nurses' station. That is good as she still can't work out that to call a nurse she must push a red button!!!!!! She sleeps the whole time but this is typical after 4 seizures. The doc came and says they want to still keep her and monitor the situation. She had difficulty eating with the coordination of her hands. She then gives up and I feed her.
The doc is getting the hospice people to come and talk with us as I may need help at home. I feel so for her. Well no other news really. Lunch has arrived so will help her. Will report when I have more news.
Ian
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